September-14th October - Hopefully my journey's end and some closing thoughts

It's been some time since I updated this blog as I didn't want to pre-empt how things were going to proceed after my chemotherapy finished.  Unfortunately, no sooner had I finished chemo and started building my strength up did I undergo a biopsy on the lump on my thyroid which identified the lump as being suspicious and needed removing to assess it further.  The Consultant now informed me that he thought there was in the region of a 20% chance that this too could be cancerous and would be in no way related to the cancer I'd just been battling - talk about some potentially rotten luck (and so much for yet again being previously told the lump was nothing to worry about)!

So on 1st October I was admitted to hospital to have a partial thyroidectomy which involved removing the right side of my thyroid.  Thankfully, whilst I was admitted overnight, this operation was fairly straight forward and nowhere near as tough as getting through the main parts of my chemo.  At this point on my journey being told you need this operation which will result in having a scar on your neck and will take time to heal was really nothing to worry about, certainly when compared to the worry of having a one in five chance of being diagnosed with another type of cancer.

Following the operation I then had that awful period of waiting yet again until the results were known and I'd know what my fate would be.  Thankfully, in that time I had my first post-chemo check-up and the results were all good and no tumour markers were elevated. Yet again, the Doctor could only suggest that the spikes in previous readings were due to adverse reactions due to my liver or kidneys.  The upshot of all this is that in all likelihood I was over-treated in that I was given a third round of chemo when the original plan was to have two.  Still, given the circumstances I can't fault that approach and over treatment's certainly better than not enough.

Fast forward to 14th October when I had my follow-up appointment to receive the thyroid results following the pathology after the operation.  Jacki and I sat anxiously in the waiting area which was deserted apart from the two of us.  I was dreading being called in and needing to do the dreaded walk into the consultation room knowing you're about to hear your fate.  Thankfully, the Doctor walk past and saw the two of us and as we were the only two there he straight away said "it's ok, you can smile" which I knew straight away meant it was good news!  Once we'd actually sat down in the consultation room he was able to confirm that the histology report confirmed that the lump - whilst very large at 6x5x4cm - was benign and needed no further treatment (even the Doctor said he was surprised by this outcome).  I can't tell you the joy and relief Jacki and I felt on hearing this!  

This meant that in the space of six days I'd had good post-chemo results and had it confirmed that I needed no further treatment on my thyroid which would have meant another operation followed by radiation treatment via a tablet (and isolation for a few days).  It was so good to get an upturn in fortunes given everything that had gone before. I literally felt like a huge weight had been lifted from my shoulders and the world instantly seemed a better place.

Following these two pieces of news Jacki and I are heading off on a well deserved holiday in a few days to live it up in Vegas for a week.  Whilst we'll miss Lyla greatly, it'll be so nice for the two of us to get away.

As a result, all being well this will be the last blog entry I'll be writing for a while, maybe ever.  I don't have any more follow-up appointments for my cancer until February 2016 when I'll have my bloods tested again and likely have a CT scan.  Until then all I can do is work on the premise that everything will be fine in the long run and there's nothing else to worry about.

So to try and bring all this to a close, it's safe to say that the past four months have certainly been a roller-coaster for me and all my family and friends and I've certainly learned a lot from the experience.  

I've learned an awful lot about Testicular Cancer and how many variants there are of just this one type of cancer, and also how many different types of chemotherapy there are and just how gruelling these regimes can be. I've learned that I've been extremely fortunate to have caught the cancer early and to be within such close proximity to a specialist Oncology unit that could provide the necessary treatment to beat it.  

I've learned how amazing NHS nurses are at providing such amazing compassionate care under very trying conditions, whereas certain doctors and clinical nurses could certainly use some training on how to deal more empathetically with their patients.  

And most of all, I think the most important thing I've learned from this whole experience is just how uncertain life can be and how important friends and family are.  It's certainly true to say that when someone's diagnosed with cancer it doesn't just affect them, it has just as much impact to those who are close to the person.  I'm just so fortunate that I have Jacki in my life who has been with me literally every step of the way, and in those times when I was feeling down and ill, she was always there to pick me up again and convince me I could beat this thing.  Of course, having Lyla as well (who's just turned one) was all the inspiration I really needed to keep going.  On that point, I have so much respect and sympathy for those who aren't as fortunate as me and don't have the same support network and may have to face their battle with cancer on their own.  It really makes you stop and think.  Finally, I know that life has a way of throwing up unwanted surprises for everyone, but one thing's for sure, when I overhear someone answer the question of "how are you" with "well, at least I've got my health" that's certainly one major positive to be thankful for.

Thanks everyone for reading.

David     

9th August - My final day of chemo but more uncertainty

I set off for the hospital on an emotional high.  After nine weeks, hopefully today was going to be my last day of chemo.  As I've come to expect though, things unfortunately didn't go entirely to plan.

I had my bloods taken initially - as I do every week - although there was no need to change the dressing on my PICC line as I would be having it taken out in a few hours after my last hit of Bleomycin.  Hurrah!

During my clinical appointment with the doctor I was informed, yet again, that my AFP tumour marker from last week's blood test was higher than the acceptable norm which could indicate that there are still signs of cancerous cells.   Last week's reading was 35 which was some way higher than the acceptable norm of around 7 and an increase on the previous spikes of 16 and 19.  The science being that the higher the reading, the more chance there is of it pointing to cancer being present.  

However, Jacki and I pointed out that this was now the third time that my AFP reading was increased - and on each occasion the elevated reading came at the same point in the cycle (week two) - before the reading dropped again to an acceptable level the following week.  It was clear that the doctor hadn't identified this trend (slightly concerning) and couldn't offer a sound reasoning for why the level kept spiking.  After all, AFP indicators are only typically given off by Testicular Cancer and therefore, there is no logical explanation for why they keep increasing before dropping back down again.  If there were still signs of cancer it would be reasonable to expect the levels to remain constantly high or to increase further, which certainly shouldn't happen as I was receiving chemotherapy to tackle this exact problem.

The only other possible explanation for the increase in readings is due to abnormal functioning of my liver as this would cause an increase in AFP readings.  As a result of this possible explanation, coupled with the fact that this is the third occasion that the readings have spiked - immediately after I have received the majority of the drugs for the three weeks - I wasn't overly concerned and had already decided in my own mind to attribute it to this.  In fact, I would have been surprised if the levels weren't high for this reading given what's gone before, so at least I was shocked in that respect.  

The agreed plan with the doctor was that the AFP levels in my blood sample taken that morning would be checked before the results were discussed in the doctor's multi-disciplinary team meeting in two day's time.  However, I was told for the time being that in all likelihood I would need a further CT scan to ensure there was no cancer still present - which is no bad thing.

Following the doctor's meeting in two days time, I was assured (twice) that I would receive a phone call on the Friday to inform me of the outcome of my results and the agreed course of action.  Fast forward to the Saturday and as I had predicted, I had yet to receive a phone call.  If you've read some of my further posts you may guess by now that I was somewhat cynical that I'd receive the phone call as this is proving typical of the lack of patient support I've received from the doctor and clinical nurse.  However, in anticipation of this - coupled with the fact that I was eager to know my most up to date results - I rang the Ambulatory Care ward last thing on Wednesday once I got home and they were able to inform me that my AFP reading had reduced back down to 8 following that day's blood test.  This was a huge relief and again, in keeping with the spike on week two of a cycle followed by a low reading for the following two weeks.

After my clinical appointment I headed to Ambulatory Care for my final Bleomycin shot before having my PICC line removed.  This was an extremely quick procedure (much quicker than having it fitted), whereby the line was literally just pulled out of my arm in a matter of seconds.  When seeing the resultant line I was surprised to see just how much tubing had been running through a vein up my arm and down towards my heart over the past nine weeks.  Whilst this PICC line has ensured I haven't had to be attacked by needles every week when taking bloods or administering chemo, I can't tell you what a relief it was to be free of the pipes sticking out of my arm and the bandage needed to constantly cover them.

On finishing my treatment I presented the nurses with a hamper of goodies Jacki had kindly put together.  They seemed very appreciative, but this was really the least I could do to show my gratitude for not only their amazing levels of professional care, but also their kind hearted and empathetic manner in the way they deal with their patients. It may sound like a cliche, but they really are a credit to their profession and to the NHS. It's just a shame that the feeling I've got from the rest of the Oncology team I've dealt with is that they're dealing simply with a case rather than a patient.

Following my Bleomycin and removal of the PICC line I headed home and started to feel what's known as the 'Bleomycin shakes' whereby I started to experience some flu like symptoms and shivery, although thankfully I didn't become as ill as I had some weeks before which resulted in me being admitted to hospital overnight.

So, fingers, toes and everything else crossed that's the end of my chemotherapy journey - at least for the time being - and I can concentrate on starting to get my physical and mental energy levels up to where they once were, albeit this is going to take some time. I'm still some way off being in the clear, particularly given my unpredictable blood results, but I'm not overly concerned about this for the time being, especially as I know already that they have dropped back down again.

There's no doubt about it, it's been a tough nine weeks of treatment and I sincerely hope that I won't have to go through it again in the future.  I can only hope that all signs of the cancer have disappeared for the time being and that through the following months and years of monitoring that I won't relapse at any point.  As I mentioned in my last post I'm entering a new stage now where I just have to sit tight and hope that everything works out.  At least whilst I was receiving chemotherapy you know subconsciously that you're doing something proactive to tackle the problem, whereas now I just have to trust the odds that I 'should' be cured and won't relapse, but of course much like a a gambler who's going with the odds and had a punt on a dead-cert horse, there's no such thing as a sure thing, particularly with the variant of Testicular Cancer I had (Embryonal Carcinoma) which I understand can lead to higher instances of relapse than a lot of other variants.

On top of this I also need to wait on biopsy results from a thyroid sample which were taken the day after I finished chemo (the fun times I spend in hospital just never seem to end!).  This is due to a result of my initial CT scan for my cancer spotting that I have a goitre on my neck, which again, unfortunately, has a low chance of being cancerous. Whilst I've been told "don't worry, it's probably nothing" by doctors, I can't help but be cynical as this is exactly what I was told in the days and hours before I was informed that I had Testicular Cancer three months ago.  This means that rather than being able to draw a nice bold, solid line under everything following the end of my chemo, I've still got two clouds hanging over me which meant I was only able to draw a slightly dashed line under things and partly celebrate the end of my treatment on Wednesday.

24th August-5th September - Cycle 3 treatment, effects and my newfound baldness

By the start of my third cycle I'd joined the ranks of being a full on baldy.  I did very well to hang onto my hair as long as I did, but alas, around five weeks after I started treatment it had really begun to fall out, so much so that I hardly had to shave my head, but instead simply had to rub it in order for most of it to fall out.  So, here's my new bald look (Right Said Fred anyone?).

I arrived at hospital on the Monday morning prepared for a long week of treatment.  In fact, the first couple of days went ok and as I'd experienced on other cycles the side effects didn't start kicking in until the third day.  Monday was a very long day and I didn't finish my chemotherapy on the Ambulatory care ward until just before 9pm after which I headed to my room.  

Just me left on the Ambulatory Care ward on Monday evening:

This was my accommodation for the five nights I was in and all in all they were very comfortable surroundings in a minimalist Travelodge type of way.  Much better than being on a proper hospital ward anyway.  Again, I'm fortunate to be within so close reach of a leading hospital that offers such facilities.

Following the end of my treatment on Tuesday I even felt up to head into Leeds with Jacki to grab a bit of fresh air and a bite to eat as my appetite wasn't affected at this stage.  I did feel a bit clumsy however having to walk around whilst carrying the 3 litres of saline solution in my backpack which I was connected up to.  

The frustration of being constantly connected to drugs and/or saline for 24 hours a day really becomes a bind after a while as it greatly limits the freedom you have to move around.  And that's not mentioning the incessant beeping from the saline pack during the night every time a kink forms in the line which, of course, seemed to happen each time I turned to my favoured sleeping position.  To add to this, the room I was staying in had two skylights to make up for the fact that there were no windows so I was awoken early each morning (at least it wasn't mid-summer!) to rays of light pouring down directly above me. It's safe to say I didn't have the best nights sleep over the five days.

By Thursday the side effects had really started to sneak up on me and I started to feel really tired and lethargic on top me starting to feel down and depressed knowing I still had two more nights before I could head home.  Thankfully I'd been able to see Lyla on Wednesday which helped lift my spirits, but it was tough being away from her for so many nights, particularly when you're stuck in hospital surroundings every day.  On the first couple of days I'd had the energy to grab breakfast and go for a walk outside before my treatment started, but by Thursday I simply didn't feel up to doing this and just waited in my room before I headed down for treatment.

As usual over the whole week the chemo nurses were absolutely amazing.  I really can't speak highly enough about how professional yet personal they all are and how they take the time to really engage with all the patients.  The doctors could certainly learn some useful lessons from the nurses in the way they deal with their patients as it's become increasingly evident to me over the weeks that as far as the doctors are concerned I'm simply another case file on the converyer belt.  Whilst I'm obviously indebted to their knowledge and experience, it would be nice for them to appreciate a bit more that they're dealing with individuals who are experiencing a life threatening illness and so it's only natural to feel worried and concerned, and with this come a lot of questions and anxiety which I feel the doctors could deal with using more empathy.  

I was so relieved to be disconnected from my saline pack before heading home on Saturday morning, although by this point I was feeling very unwell so was in no way able to celebrate.  I lost count of the amount of hours I slept over the weekend and didn't have the energy to do anything - sitting outside in the garden for ten minutes like a zombie was about the highlight of what I was able to do.  I also struggled with some of the side effects of the countless drugs I was taking including steroids and anti-nausea tablets which, whilst intended to combat the effects of the chemotherapy drugs, also bring their own side-effects, the worst of which for me was severe acid indigestion and involuntary shaking on my left foot and hand caused by the steroid tablets.  

By the following Wednesday I'd started to pick up a bit (relatively) which was just as well as I was back in hospital for another Bleomycin top-up which thankfully went without any problems.  The doctor also confirmed in my clinical appointment that my tumour markers had remained low (thank goodness) and so I only had the following Wednesday's session to go and I'd be all done - assuming my tumour markers don't take an unexpected spike again as they've done at the same stage of my previous cycles.  To say I'm still nervous about next week's results would be an understatement.  

I was also a little taken aback by the doctors warning that it would likely take up to six months before my energy levels would return to normal levels again.  At this current moment I can believe this as whilst my mind is starting to feel like its getting back to being in the land of the living again - although I'm definitely suffering from what's referred to as chemo brain (very fuzzy head and my short-term memory seems to be terrible) the rest of my body is lagging behind even more.  I'd prepared for my recovery to last many weeks after treatment had finished, but the thought of this lasting up to six months is a little concerning.

I'm also starting to come to the realisation now as I'm about to reach the end of my treatment - which I'm extremely happy about - that I'll also be entering the next phase of the unknown where I won't be taking any proactive steps to tackle anything.  As unwelcome as the chemotherapy has been, at least I know I'm doing something positive to tackle the problem, whereas all I'll be able to do from next week is wait and hope that my next scan in a few weeks shows that any signs of the cancer have completely cleared. But, as I happened to read in a quote, "What's the point in worrying about the unknown? It's akin to walking around with an umbrella up waiting for it to rain."  Very true, but easier said than done!

16th-23rd August: Feeling better, but more tumour marker worries

Thankfully this week I started to feel better and had a lot more energy.  I was able to do some work from home and it felt good to actually engage my brain and do something constructive.  Things were a little fraught at the hospital on Wednesday however.  

We followed the usual mid-cycle routine for a Wednesday.  The nurses took more blood samples and changed the dressing on my PICC line and took the usual blood pressure and blood oxygen levels before I waited to see the doctor.  Well, the Professor actually who I've begun asking to see specifically as I'll be fortunate in that I'll be able to arrange appointments privately in the future (all appointments and care to this point has needed to be done through the NHS as no private care providers will administer this type of chemotherapy), which will hopefully reduce the amount of time I need to wait.

I was keen to discuss my elevated AFP blood tumour marker from the previous week where the reading was 16 which unfortunately indicated that there may still be some cancerous cells present.  I believe the typical normal range is up to around 6 or 7.  This meant that over previous weeks my readings had fluctuated been 4, 19, 5 and 16.  The professor agreed that this didn't make any logical sense and couldn't provide a definitive explanation for this other than he hoped that the levels would again come down which would be checked from the blood sample I'd just had taken.  However, he informed me that if the levels remained high or had increased further, this would not be good news and would likely lead to more tests, CT scans and a review of my current treatment plan would need to be undertaken.  This obviously worried and confused me somewhat.  Why, when I was on a course of chemotherapy, would my readings spike twice to levels that would cause concern?  I understand that during chemotherapy tumour marker readings can temporarily increase - but supposedly not as high as the readings I'd been registering. Could my body be reacting in a way that is possibly an exception to the norm?

I also informed that Professor that I was suffering from bad Tinnitus and hearing since the start of my second cycle.  I already had some mild ringing in my ears before I started chemotherapy, but this known potential side effect of the Etoposide drug was really starting to affect me to the point that my hearing was extremely sensitive and any high-pitch sounds really cut through me.

The professor said, understandably, that the Etoposide drug was crucial in my treatment plan and I must receive the next cycle.  However, to try and minimise any further risks I could opt to have the initial three day part of the cycle over five days instead.  What a dilemma.  I was just about mentally prepared for the three days of treatment next week, but to be told this would be extended to five days was really some unwanted news.  And there are no short cuts by having the drugs over the five days as only the level of the dosage of the chemo drugs is decreased, yet the amount of fluids/saline I will actually consume over the five days will be increased.  

At this point I was edging towards sticking to the three day option, but understandably Jacki and the prof countered that by saying for the sake of an extra two days it would be foolish to jeopardise any potential long-term effects on my hearing.  Of course they were right.  Therefore, based on how I felt during the first three days of my previous cycle I'd already requested to stay in the hospital overnight, which meant that a two night stay was now being extended to five nights as I will actually receive the drugs Monday through to Saturday morning.  Not a week I'm looking forward to!   

I finished the appointment with the Professor feeling concerned and anxious as I knew I would be able to obtain my latest blood readings whilst I was at the hospital having my Bleomycin top-up.  We waited the usual two hours whilst the pharmacy made up the prescribed chemo for me (I can understand this wait as there's no point wasting expensive drugs if I wasn't signed-off as well enough to receive them).  Whilst receiving my chemo I asked a nurse (Elfie) if she could access my most recent blood results.  I could see she started to print them off and my heart started racing.  Please let them have returned to normal levels, I just couldn't cope with having to face the 'what next' unknowns if they remained high or had increased.

I quickly looked at the print out which contained dozens of readings, but no sign of the crucial AFP marker reading.  I asked Elfie why it wasn't on there.  "Oh, it appears that whoever's requested your blood sample hasn't asked for the AFP levels to be checked."  I could not believe it!!  How was it that this crucial reading given my previous week's results hadn't specifically been asked for?  It's things like this that do leave me feeling nervous regarding some processes and procedures that are in place in hospitals.  Who was responsible for requesting my bloods and why had they not asked for the AFP marker? Furthermore, why did the Professor not explicitly check that AFP was not requested for my blood checks?

Anyway, thankfully Elfie was able to take yet a further blood sample from me and this time ensured that the AFP level was analysed.  If it wasn't for this, the team of doctors and consultants would have met in two days time on my Friday to review my results and assess the best course of action, only to find that the key result they needed to review wasn't present.  This could potentially have held up and progress on further treatment by a further week which would have left me in that awful position again of not knowing whether I still had cancer and how my treatment would be affected.

Having finished my top-up of Bleomycin (which meant the end of my second cycle - originally the plan mean that this would have been the end of my chemo), we headed home and I felt ok aside from some usual mild flu symptoms which I tend to feel after receiving Blemoycin.  

A few hours later Elfie kindly phoned as my most recent blood results had come back.  I literally held my breath before she informed me of the good news that the AFP level had dropped down to 7 which was a huge relief.  I thanked her so much for taking the time to phone before informing Jacki of the good news.  Hopefully this will be the start of further such results over the next few weeks.

The rest of the week I spent doing some work coupled with spending as much time with Jacki and Lyla as I could whilst I felt well, knowing that next week was likely to be a lot less enjoyable.  I also took the plunge and completely shaved my head on the Friday.  By this point my hair was really starting to fall out, but I guess I'd done well to hold on to it for six weeks since my chemotherapy started.  I was prepared to lose it after two to three weeks.  So, for the next few weeks at least I'll be looking like a member of Right Said Fred but it's funny how quickly you get used to changes like this.  And Lyla for some reason seems to love stroking and tapping daddy's new shiny head, so at least someone's getting some enjoyment out of it.

5th-14th August - Cycle 2 and its nasty side effects

My second cycle of treatment started pretty much as I'd expected.  Three full days in hospital with various tests and checks before being connected up to the chemo for hours on end.  On the first two days there were a couple of administrative hold-ups which meant we weren't able to leave hospital until around 6pm so they were long days.  After the first couple of days I already started to feel very tired by the time Jacki and I got home so it was just a case of trying to have something to eat and a quick cuddle with Lyla before I headed to bed.

As expected, following the final hit of treatment on the Friday by the time I got home in the afternoon I was pretty much bed bound, but this time even more so than after the first cycle - which was already pretty bad.  I'd heard from other people that the second cycle was more difficult so the effects were to be expected, but I couldn't believe how long they were to last and how bad I felt.

By the following Tuesday I was still pretty much incapable of doing anything other than to stretch my legs for a couple of minutes at a time and for some unknown reason I started to suffer incredibly bad indigestion and heart burn which I later discovered can be part of the side effects of some of the tablets I was taking which, ironically, I was taking to help manage the chemo side effects.  It's almost like a vicious circle.  You take one thing to manage one side effect only for that to trigger something else.

Fast forward to the following Wednesday morning - when I was returning to hospital for a Bleomycin top-up - I felt incredibly ill and could almost physically not drag myself out of bed.  During the night I'd gone to the loo only to realise I was feeling light headed.  Next thing, bang, I'd fallen and hit my head on the bathroom sink which left a nice shining bruise and scratch on my forehead, which coupled within my thinning head of extremely short hair made me look look I'd been having a nigh time scuffle with someone.  By the morning I was feeling no better but thankfully I was sick before Jacki and I had to head to the hospital which helped ease the symptoms a bit.  At least I knew I'd be able to consult a doctor in order to try and fin out what I could do to try and make things better.

I had my usual change of dressings on my PICC line and bloods taken before waiting to see the doctor.  The registrar doctor we saw was extremely kind and helpful and we went through all the medication I was taking to try and come up with a plan of how to combat the sickness I'd been feeling.  Following this I headed off for my top-up of Bleomycin before going home. 

Thankfully by the Thursday I'd started to feel slightly better, although still completely lacking any real energy or appetite at this stage.  Whilst I had been trying my best to eat, it's safe to say I wasn't consuming enough calories to replenish what was being taken out of me.  I continued to perk up on the Friday and was able to login to my work laptop to begin trying to do some light work.  I just hope that I continue to pick up over the next few days which should leave a good week or so of feeling better before I have to start contemplating my third cycle.

29th July - A not so good day gets a lot worse

I arrived home after my treatment hoping to get a bit of rest whilst watching the cricket (England were all over the Aussies!).  Unfortunately, within about ten minutes I started to feel unwell.  From out of nowhere I started to experience really bad shivers and a tingling sensation in my fingers and toes and my temperature started to rise.  After around half an hour with the shivers getting worse (I was wearing three layers by this point) my temperature was over 38 and I wasn't in a good way.  Jacki was understandably starting to feel worried at this point and rang the hospital and they told me to come in without delay.  So after only being home for an hour or so, I was being driven back to hospital again.  So much for a nice leisurely afternoon on the sofa!

We arrived at the assessment ward I'd been directed to around 5pm and was seen within 20 minutes.  By this point my temperature had tipped over 40 degrees which clearly wasn't good.  I was assessed by a junior doctor and asked many, many questions about the symptoms I was feeling.  Without much delay I was having my bloods taken again (for the second time in 8 hours) before being hooked-up to an antibiotic drip and then a saline solution.  I was told that in my situation, given my low white blood cell count that the approach was to administer treatment first before necessarily trying to diagnose what the cause was.

I was left to lay down in a treatment room and whilst the shivering had gone I'd developed a really bad headache.  A consultant soon came to examine me and basically asked all the same questions that the first doctor had asked.  I felt like I was undergoing a verbal exam, but I guess it's better to be over diligent and I was thankful of the good care and attention I was getting.  I was informed at this stage that I was going to be kept in for one night at least and whilst this would usually have really disappointed me (who doesn't like being in their own bed), in the state I was in I was just glad that I wouldn't have to face another journey home in the car.  I didn't want to move anywhere.

The nurses kept checking up on me whilst I waited for a bed became available on a ward.  As my headache still hadn't gone I asked if there was anything else I could take in addition to the antibiotics and paracetamol I'd already had.  Thankfully I was given some codine which helped to ease the headache.  I must have started to feel slightly better at this point as I realised that the battery on my phone was getting low and I didn't have a charger with me.  Panic stations began to set in - talk about first world problems!  Jacki (bless her) headed out on a mission to try and buy me a phone charger which ended up involving a trip to a supermarket and then a late night pharmacy.  If only I hadn't been tight stubborn and upgraded my phone earlier, Jacki's mission to find a charger and cable would have been much easier.  Meanwhile, I was left laying in the examination room laying on my back using a sock as a makeshift eye mask to protect myself from the searing rays coming from the strip light directly above my head.

My surroundings for 5 hours.....

After a five hour wait I was finally transferred to the Teenage Cancer Trust ward  at 11.30pm.  Yes, I realise at 36 I might be pushing the boundaries of eligibility for this ward (albeit a lot of twenty year olds apparently use this ward), but the nurses had very kindly arranged this ward for me as it's a much nicer surrounding than some of the other wards (and I may have cheekily asked if there was a ward available that had Sky TV so I could watch the cricket the following day. :-)).  

A nurse on the ward did some further checks and gave me some more antibiotics through my PICC line before I was ready to hit the sack.  After being given a sleeping tablet to help me through the night I nodded off and only awoke to the nurse changing my saline drip and to give me some more antibiotics during the night.

The following morning I woke around 9am and felt so much better.  I was assessed again by a doctor and told that provided my temperature didn't rise again that I'd be able to go home later in the afternoon which obviously cheered me up a lot.  I had a shower and managed a really good breakfast in the canteen - the best I'd eaten in a few days.  Jacki came back to the hospital later in the morning and we spent some time with a family who were with their daughter who was undergoing her last day of chemo so their spirits were high.  One thing I've found really surprising so far during my treatment is how personable and upbeat people are, regardless of their situation or prognosis.  It's really refreshing how people cope with their situations, it may sound corny, but it is really inspiring to see how people, many of whom have a much worse prognosis than I do, mange to deal with their illness with such dignity and good humour.

The communal lounge in the Teenage Cancer Trust ward....

Oh, and yes, I was able to watch the cricket too in the communal lounge which is a brilliant facility.  There's a large TV, pool table, guitars, computers, equipped kitchen - it's such a great facility and a great way to help younger people who are going through a tough time.  Thankfully I wasn't the only one wanting to watch it on the communal TV so it didn't feel too guilty.  Better still, in the early afternoon I received the confirmation that I was able to go home (although it did mean I'd miss Domino's pizza night on the ward) and was going to be prescribed some further oral antibiotics, so after another couple of hours we were on our way and I was back home by late afternoon and was relieved to put the past 24 hours behind me.  I still don't know what brought on the high temperature - was it an infection or a reaction to the Bleomycin drugs?  As yet, I don't know, but hopefully the blood samples will reveal all and I'll be updated at the hospital next week.

29th July - Clinic and raised Tumour Markers. Another Chemo cycle needed

I woke up feeling much better and ready to head into hospital for the last of my Bleomycin top-ups which would conclude my first cycle of my treatment.

We arrived at the hospital early in time to have the dressing changed on my PICC line and my bloods taken before my 9.30am appointment.  This time I'd asked to see Professor Joffe who had returned from holiday and I'd heard good reports about him.

We headed in for the appointment and Danny (the nurse I'd dealt with in the past) also sat in.  I was asked how I'd been getting on before, unfortunately, I was informed that one of the tumour markers (a protein indicator) from last week's blood sample had spiked significantly.  Typically the reading should be 5-6, the chemo could have led to an increase to around 8-9, but mine had spiked to 15!  This is a firm indicator of a likelihood that some cancerous cells are still present and as a result, I was informed that I'd now need to receive three cycles of chemo rather than the two I was currently in the middle of receiving.

Obviously this was not good news and took me completely by surprise.  By this point I was in the mindset that I was all but through my first cycle of chemo and only had three more weeks to go.  Now, I was being told that I was, in effect, back at square one again and would need to face up to another six weeks of treatment.  Looking at the bigger picture, however, I was told that these increased markers were not uncommon and that the third cycle was needed as a belt and braces approach to ensure that any cancerous cells were hit hard now, rather than the risk of recurrence later.  In summary, my long term prognosis would not be affected by the change in my situation.  In addition, having all but finished one cycle of chemo it was somewhat easier to digest the news that I'd need a further cycle knowing that I now only needed to face two rather than three had I have received the news before my treatment started.

Having finished my appointment with Prof Joffe, who was very helpful and informative, we waited for my drugs to be prepared (which can only be done once I've been given the green light at the clinic) and I then received a half hour Bleomycin infusion.  I said my farewells to Will who was receiving his last Chemo treatment today and we'd spoken a lot of the past couple of weeks.  We left the hospital around 1.30pm and I was felling fine. 

25th-28th July - Rest Days

Having felt quite good for a couple of days, unfortunately on the Monday I started to suffer some pretty bad flu like symptoms.  I likely picked this up from either Jacki or Lyla who had also been under the weather for a couple of days.  

It's a tough situation knowing people around you aren't 100% well and that your immune system is low, but unless you completely isolate yourself there's only so much you can realistically do to protect yourself.  Whilst we've been extremely careful in cleaning surfaces and washing hands many many times there's little that could have been done to protect against picking something up through airborne particles.  Besides, given the choice of either being isolated from Lyla or accepting the risk of infection whilst being able to have close contact and cuddles with her, it's not even a decision to think about.

Thankfully by the Tuesday I was feeling a lot better and was ready for my latest Bleomycin top up on the Wednesday. 

24th July - Hair today, gone tomorrow

One of the all but certain side effects I know I'll have to encounter is a complete loss of the hair on my head.  I've read a lot around this and found that it's likely to happen around two to three weeks after I started treatment, so I've probably got around two weeks (best case) before it starts falling out.

To help try and make losing my hair slightly more bearable, I've decided to shave my head first so I feel like I'm in control of what's going on.  Whilst my hair will still fall out, at least I won't need to worry about big clumps disappearing and I'll already be used to seeing the shape of my head so it won't come as such a big surprise.

So here's my new look.....

I must say I was quite impressed with the results!  I think part of me had always wanted to know what I'd look like with a buzz cut (yes, that's what it's called!) but I'd never had the bottle to follow through with it.  At least I know that when my hair slowly starts to grow back (hopefully 6 or so weeks after I finish chemo), that I'll be happy to keep it very short if it does start to grow back in a weird way - which often happens apparently.

Some people's hair grows back thicker or thinner, a different colour, or even curly when they've previously had straight hair.  It sounds like it could be a bit of a lottery.

22nd July – Cycle 1, first Bleomycin top up

For some reason I awoke feeling really tired and nauseous – definitely the worst I’d felt since the weekend and the anti-nausea tablets and paracetamol didn’t seem to help at all.  However, there was no time for moping around as we had to be at the hospital for 9am.  I first went to have the dressing changed on my PICC line by a nurse before having my bloods taken.  At this point I was feeling really unwell and had to stop the nurse a few times as I felt feint whilst I was sat in the chair.  Thankfully I got through this and proceeded to wait for my appointment with the consultant Oncologist.

After a thankfully short wait (by this time I was becoming accustomed to waiting times in terms of hours rather than minutes) I went in to see Dr Stark who asked how I was getting on.  I said I’d struggled over the weekend and basically like I’d had the hangover from hell.  Obviously he was used to this kind of update and said that unfortunately it’s just part of the side effects.

He asked if I’d had any other notable side effects, particularly bleedings or fevers and thankfully I’d had neither of these.  He then examined my chest using a stethoscope to make sure my lungs were fit and ready for my first Bleomycin top up.  Whilst Bleomycin is one of the key parts of my chemo regime, it does come with some pretty significant risks regarding short and long-term effects on my lungs, but these are all relative compared to the reasons why I’m having this treatment in the first place.

I then headed to the ambulatory care unit ready for my top-up.  Unfortunately I had to wait an hour and a half until a place become available.  I can accept this type of delay as the nurses have to do an amazing juggling act dealing with all the patients who are dropping in and out during the day to receive different treatments with no definite way of knowing when they’ll turn up (as there’s a lag after patient’s clinical appointments).  What does frustrate me though is having to wait for appointments with the doctor, particularly when my 9.30am appointment (the first of the day) was already late by over half an hour, which of course then has a knock-on impact on all the other patient’s subsequent appointment times.  I don’t mean to come across as whining in my complaining, but surely the department could come up with a more efficient way of managing appointment times?

Once a seat became available I was hooked up to flush my PICC line before having the Bleomycin.  Thankfully this was only a 30 minute top up so we didn't have long to wait.  The waiting also gave me the opportunity to speak to the chap next to me who was receiving chemo for non-Hodgkin's Lymphoma.  I really felt for this guy, he'd been in remission for a couple of years, but had unfortunately relapsed.  He was in the process of starting a much longer course of chemo than I'm having, and if that weren't bad enough, after that he needs to go through some pretty brutal stem cell surgery and a long period in hospital.  

Listening to his story and how matter of fact and up-beat he was really made me stop and think.  If ever I needed a reality check and a reminder of just how lucky I am, this was definitely it.  For all the positive energy and upbeat thinking I've been trying to apply to treating my condition there have been many times when I've also drifted to thoughts of "why me?  What have I done to deserve this?"  However, having listened to this guy's story I made a vow to myself to never think like that again and to appreciate how lucky I am to have a positive prognosis and to have so much love and support from family and friends.  

18th-21st July - Rest Days

The Friday and Saturday (the two days immediately after my treatment) were tough.  I felt ill, didn’t want to eat, didn’t want to speak to anyone, in fact I had no energy to do anything really – not even enough to focus on resting the iPad in bed in order to watch some TV!  Still, I was expecting this but I think it was more the way it crept up on me that caught me out.  I thought it would be a big bang type hit, whereas this blighter had snuck up on me and caught me unawares just as I thought I was doing ok.

Bizarrely, on the Sunday evening I felt an ever so slight upturn in energy and managed to eat a plain jacket potato with some grated cheese.  Whilst it felt like I was trying to battle through the equivalent of eating ten potatoes, it did feel good to get some food down which in turn helped with my energy levels.

By this time I’d also really started to notice that my usual tastes and smells were all out of sync.  Certain smells which used to be quite appealing suddenly really seemed to make me feel sick – mint or citrus type smells were an example of this and I found that it wasn’t nice trying to brush my teeth with mint toothpaste.  Similarly, certain foods which I’d been loving only two days before all of a sudden even the thought of them made me feel nauseous.  Ready made microwave pasta dishes (and nice ones at that) were now consigned to the rubbish.  Instead I found myself craving only a few very limited food types, specifically bread, cheese and hard boiled eggs.  I’m sure there’s some logical biological explanation for these cravings (probably that my body was simply craving carbs, fat and protein) but I’ll just keep it simple by saying that I decided that whilst I felt ill, I was going to eat whatever I wanted to, regardless of how unhealthy it may otherwise be considered.

By the end of the Tuesday I was feeling quite a lot better, still weak and lethargic, but by comparison a lot better than I’d been a couple of days before.

16th-17th July - Cycle One, Treatment Days 2 & 3

I was surprised how easily the first few days went.  Aside from a bit of tiredness on the third morning I couldn’t really tell that I was being pumped full of toxic chemicals and felt pretty normal.  Everything was great at the hospital.  I’d settled in to becoming one of the regulars and it was good chatting to other people on the ward, many of whom were having tougher battles than I was.

I was really happy when I was able to leave hospital at lunchtime on the Friday as my first round of treatment was done!  However, this relief was soon short lived.  Jacki and I stopped at McDonald's on the way home for a well deserved full fat treat and it was around then that the effects started hitting me.  I just couldn’t stomach my food and started to feel really wishy-washy.  We got home and I spent the rest of the day on the sofa feeling sorry for myself before going to bed very early.

As well as an immense feeling of tiredness and being extremely lethargic, I also developed a really annoying case of hiccups.  I just couldn't seem to get rid of them for a period of around twelve hours, although thankfully (at the nurse's suggestion) a couple of Biscopan IBS tables seemed to help a little.

Thankfully I was no longer attached to my back-pack of fluids so I had a little more freedom in being able to move around, not that I felt like doing much moving.  Looking back it was such a strange way in which the effects started hitting me, it was like something creeping up on you from behind and then all of a sudden, bang!  I also kept waking up through the night feeling uncomfortable and feeling nauseous, although thankfully once I took the anti-nausea tablets they helped to calm things down.

From the Friday afternoon into Saturday I must have slept for around 17 hours which shows just how much my body was craving some rest.

15th July - Cycle 1, Day 1 Chemo

And so it begins!

I arrived with Jacki in the ambulatory care day ward just before 9am with one elderly chap already hooked-up on his treatment. I only had to wait for a few minutes before I was connected to flush the PICC line before being connected to other pre-chemo drugs such as an anti-nausea infusion. 

After a little over two hours I was connected to my first bag of chemo drugs (Etoposide, the 'E' part of BEP).  This was very uneventful, I'm not sure what I was expecting, but whatever it may have been it didn't happen.  It was nice being able to sit in a comfortable reclining chair as I was going to be spending many hours in these chairs over the next few weeks.

Wired up to a bag of chemo.......

I also had a quick chat with a couple of other guys who had arrived in the ward who were also having the same BEP treatment. Will was starting his third and final cycle and seemed to have coped pretty well through the previous two. The other chap, Jonathan, was on for his first cycle one bleomycin top-up so was literally one week ahead of me in terms of treatment. He'd already said that he'd gone off coffee and was struggling with fatigue, but other than that he seemed to be doing pretty well. The main noticeable difference between the two was that Jonathan still had a full head of hair whereas Will's was all gone. It will be interesting to see if I bump into Jonathan next week to see how his hair's going as it'll be day 15 for him and I've read that day 16 is d-day with regards to hair loss.

The first infusion of Etoposide was fine. I didn't feel any adverse effects and I ate my lunch with no problem at all (a nice healthy super salad Jacki kindly got me from the on site M&S). 

A bag of chemo drugs covered in a brown bag (due to sensitivity to light)......

I then had further infusions in the afternoon and again didn't feel any particular side effects, other than needing to visit the loo to pass a lot of fluid as I was constantly being dripped with solution to protect my kidneys from the adverse effects of chemo.  It's also important to pass the toxins from the drugs quickly as possible to prevent any damage to kidneys.

I was also connected up to the saline solution in the afternoon so was actually infusing two types of fluids as I was also connected to the Cisplatin chemo (the 'P' in BEP). The saline is already packed in my back-pack complete with the pump ready to take home tonight.  Will already gave me a heads-up that this pack may drive me mad during the night as it beeps to inform of any kinks in the tubing which causing a blockage in the flow of the solution. Without the beeping the noise it makes whilst dispersing the fluid reminds me of the noise the motor makes on a car's windscreen wipers so hopefully this won't be too distracting during the night.

Thankfully time didn't pass as slowly as I though it would and it certainly helped chatting with the other patients on the ward. Well, I say a ward but it's more of a clinical lounge. I even helped with manning the phones whilst the two nurses went on their lunch (well I did tell them that I'd hold the fort so what was I supposed to do!?).  This seemed to provide a bit of light hearted entertainment to people as I walked over to answer the phone whilst transporting my mobile pump stand and drip.  I'd even politely requested whether I could watch The Open golf on the TV tomorrow so it looks like this could be a goer! I would have happily watched it online through my iPad but unfortunately this ward isn't wifi enabled, and even if it was I doubt it would be fast enough to support live streaming.

By around 4pm I did start to feel a little nauseous and by the time I got home at 6pm I was starting to feel really tired. I did manage to eat my dinner without any problems, my appetite certainly wasn't affected. I hit the hay at 9 o'clock and woke up a couple of times during the night needing the loo. I need to measure all my fluid outputs to make sure my kidneys are working properly to flush out the toxic chemo drugs.

14th July - PICC Fitting

Today I was fitted with my PICC (peripherely inserted central catheter) line which will act as the tap for administering all the chemo and for taking blood samples over the next six weeks. This little tap (well, there are two taps actually) will poke out of the bicep on my right arm like little bag pipes for the next six weeks and whilst this will be a slight burden with regard to practicality (showering etc) it will be a huge benefit over the course of treatment as it will mean I won't need to be constantly attacked by needles in order to insert the drugs or to take blood samples which I'll need to have done many times.  

An infusion tube connected to my PICC line.....

The procedure was fairly straight forward in that I laid down whilst being given a local anaesthetic in my right arm before having the line inserted half way up my bicep where they could find a good vein. From the insertion point the tube is fed further up my arm and round a bend to point it down towards the heart.  Having the tube inserted felt slightly odd as I could feel the sensation of having a foreign body being pushed up my arm which was a bit disconcerting. I was also told at one point that I had to turn my head to the right and rest my head on my chest which would enable the nurse to route the PICC line down the correct vein at a junction rather than it taking a wrong route and going up my neck. 

After the PICC was fitted I went for a chest X-ray to make sure the line was correctly aligned in the correct position. I've no idea what happened at this point, but I came pretty close to fainting and had to be wheeled back in a wheelchair after the X-ray. I don't think this was in any way due to the PICC being fitted, I think I must have just suffered a bit of a turn. 

The X-ray confirmed that the PICC line was correctly fitted in the correct vein so the output tap was bandaged up ready to go for the following day. I rewarded myself for being a brave boy by having a MacDonald's on the way home.

10th & 13th July - Sperm Banking

Well, without getting into too much graphic detail the two visits I made to the sperm bank were pretty non eventful. There was a lot of paperwork to go through on my first visit to ensure I was giving my consent to all the storage questions and potential what ifs for different scenarios. 

I was then ushered into a private room in order to do the do where I had access to a cupboard labeled 'Men's Literature', and no, this didn't contain football or rugby magazines. Fortunately the procedure went pretty smoothly. Whilst I was in unfamiliar surroundings, I was at least able to call on years of experience in order to overcome any potential stage fright, although the destination target area (i.e. the cup) was pretty small.

All being well all this hassle will be a wasted exercise as my swimmers should return to normal a few months after my treatment's finished, but it's better to be prepared.

I had to make two visits to the hospital in order to make two deposits, one on the Friday and one on the following Monday. I was informed this resulted in ten different virals of my swimmers being stored in case they were ever needed. The storage will be funded by the NHS for at least five years, and should I wish to keep my Chateau Burrow vintage in storage for up to a further 55 years, it would cost me a little over £250 per year. At this point I had only consented for my sperm to be stored and not what it could be used for. Jacki and I will need to go through further consultations in order to confirm these decisions.  Yet more hospital appointments!

8th July - Final Diagnosis

So today’s the day I find out the full diagnosis and and what the next steps are regarding treatment.  After a very long wait (approaching two hours after my appointment time) in the waiting room where I was getting more and more anxious, I thankfully received the news that the CT Scan showed the cancer had not progressed beyond stage 1.  This was the first slight piece of good news I'd received since my journey had started.  I can't tell you how relieved I was!!

However, as I already knew the variant of cancer (EC) coupled with the signs of ‘vascular invasion’, this means that whilst the cancer may now be entirely gone, my chances of it not returning with the next two to five years are only 50/50.  Therefore, the strongly suggested treatment is for adjuvant (upfront preventative) chemotherapy. 

At this point this was good news for me in that I will only need two cycles – best case scenario I had prepared myself for given my pathological report that I’d received.  On top of this, I’ll be able to start in only a week’s time so I don’t have to wait even longer with any worrying drawn out.  Sure, it would have felt amazing to walk out of the hospital that day knowing that I was choosing not to have chemo, but to then have a constant 50/50 cloud hanging over me for many years to come would have been mental torture.  In that sense it's much better to suck it up now and have the chemo with a view to reducing future risks of recurrence down towards the low single digits.

The consultant also reassured me that provided I’m up to it, I can have the chemo administered as an outpatient with hopefully no need to stay in overnight – which I was very happy about.  He also made it critically clear how important it is to flag any changes in temperature, fevers or even minor bleeding as what would usually be classed as minor ailments can become life threatening due to my immune system being shot.  I was however more positive in that he said I could interact with Lyla and didn’t have to be so worried about coughs and sneezes, rather it is more viral problems I need to be aware of.

The CT scan also happened to show that I have an issue with my thyroid which is something I’ll need to get checked out once this whole cancer episode (finger crossed) is behind me.  Almost like a 'buy one, get one free' diagnosis - what is going on with my body!?

I had a follow up with a really nice nurse called Danny who I got on with far better than the nurse the previous week.  Danny talked me through the next steps and what was going to happen over the next week before my treatment started.  He confirmed I was booked in to start chemo on 15^th July (a week from today) and beforehand I need to pay two visits to the sperm bank as the chemo in a small number of cases can mean that my swimmers wouldn’t be able to reach the intended base on a long-term basis. 

I was also booked in for the Tuesday morning (day before treatment starts) to have my PICC line fitted.  This is a tube like device which will be inserted in my arm which I’ll explain later.

All in all I was relieved with the news I received today and it came as a relief to my parents too when I told them later as I'd prepared them that it could be a long treatment road ahead.

1st July-8th July - Understanding Chemotherapy & Chemo worries

I’d already done some reading about the chemotherapy typically involved in treating testicular cancer.  Before I started this reading I’ll admit I was very naive in my understanding of what chemotherapy was.  This was likely a result of me being very lucky in that I’ve never known someone close who’s needed to go through chemo.  However, even if I had previously come across someone who'd been through chemo, I wouldn't have appreciated just how many different types of treatment there are and how different they can be in terms of their administration and side effects.  Consequently, whilst I knew chemo wasn’t a pleasant experience by any means, I probably didn’t appreciate how severe - particularly the type used for testicular cancer – the treatment can be.

The chemo typically used to treat testicular cancer is a combination of three potent chemicals whose names are abbreviated to BEP (Bleomycin, Etoposide and cisplatin [platinum]).  Whilst the treatment is extremely effective in tackling testicular cancer, it can be a brutal beast.  I found this link provided a really useful explanation to how the individual drugs work; http://www.lisamckaywriting.com/chemotherapy-for-dummies-what-does-bep-do/

A single cycle of BEP chemo is given over 21 days with various combinations of the drugs being administered separately on different days with rest days scheduled in between.  Some days you can be wired up to the intravenous drugs on and off for up to 8 hours (yes, 8 hours) as the toxic chemicals flush their way through your body in order to target the cancerous cells.  

I don’t mean that last sentence to sound flippant, but that is basically what chemotherapy is.  It’s toxic drugs designed to kill cancerous cells.  Unfortunately, however, the drugs can't differentiate between the 'good' and 'bad' cells its targeting, and hence the negative side effects where the drugs impact rapidly producing 'good' cells in the body (white blood cells/immune system, hair cells etc).

Typical side effects can include nausea and sickness, extreme lethargy, weight loss, very limited immune system, hair loss, loss of appetite, a metallic taste in the mouth.  Basically it can be like having ongoing flu (proper flu that is, not just man flu!) coupled with the ongoing challenge of needing to continually visit hospital on and off.  I’d read a number of blogs from patients who’d been through BEP chemo and based on some of their first hand experiences I already started to feel queasy at the prospect of some of the things they’d been through.

Based on the diagnosis information I had to date I began preparing myself for a best case scenario of 2 cycles of chemo (over 42 days!) provided it was contained as Stage 1.  I was really keeping everything crossed that it had not spread further as this would likely lead to 3 or 4 cycles or chemo – potentially up to a time frame of 84 days of treatment and side effects.  I just did not want to contemplate this scenario at this stage, but I needed to be aware of it.

During this period I began to make enquiries about whether I could receive chemo privately (I was lucky to have private health cover).  Lots of private hospitals advertised the option of having chemo administered privately, or even from your own how.  “Fantastic” I thought, that would really put my mind at rest to know I was in comfortable surroundings or at home (note: I don’t mean to sound like a spoilt brat at this point, but I thought if ever there was a time to make use of my private health cover, than this was it). 

However, following many phone calls to make enquiries, to cut a long story short I was repetidly told that the BEP chemo is so potent and intensive in the way its administered and with its risk of adverse side effects it could only be given by specialist NHS units.  In that sense, I can count myself extremely lucky to live within half an hour’s drive of a world renowned Testicular Cancer centre at St James’s.  I’d read some chemo blogs where patients have had logistical problems just getting to the hospital in order to receive treatment.  Fortunately that’s one less thing I need to worry about.

1st July - CT Scan and follow-up appointment

I headed with Jacki to St James’s for my CT scan.  The results of this will determine what stage the cancer is at.  Stage 1 would mean it was contained to the testicle, anything else would mean it had spread to some varying degree, e.g. Stage 2 would mean it had spread to my abdomen and so on.

I followed the CT scan and subsequent blood tests with my initial meeting with the St James’s specialist nurse and junior Oncology consultant.  I explained everything I knew regarding my diagnosis to date and become increasingly frustrated by the nurse’s reluctance to discuss any potential next steps.  To be honest, I simply did not like the manner in which she addressed me and Jacki, nor the junior doctor either who she frequently spoke over.  He was much softer spoken and I could tell he was trying to be more open and honest with me, but the nurse kept interrupting him.  Highly unprofessional I thought. 

Her attitude to me felt very patronising and didn’t display much of a caring manner at all.  For example, when I mentioned that I knew I had 95% Embryonal Carcinoma she blunty said “you don’t need to worry about that, you just need to know it’s a non-Seminoma type”.  Of course I need to worry that it’s 95% EC!  I had done enough reading to understand there are various types of non-Seminoma type diagnosis, it’s not simply a broad brush ‘one size fits all’ approach to the treatment.  I knew it was aggressive and spread quickly, so I wanted to understand the potential consequences better, including the likelihood of chemotherapy, even though I was reassured that EC is very receptive to chemo – which is obviously a good thing!

On top of this I was given a further breakdown of the pathology report which showed there were signs of ‘vascular invasion’, which in simple terms means the cancer had started to try and escape from the testicle – another key sign I knew from my research which pointed more to the likelihood of needing upfront chemo.

I left St James’s feeling angry and frustrated that I had not been able to engage in a more constructive conversation to understand the likely next steps, even if the full picture wasn’t known at this stage due to waiting on the CT scan results.  It was only when Jacki and I pushed to say that we needed to consider future plans; how soon would chemo likely start?  How many cycles may be needed?  Mentioning that we’d need to ensure childcare for Lyla was in place, I needed to give work a more informative update – logistical issues like this that the nurse didn’t seem to appreciate until we explicitly outlined them.

I did leave hospital that day with an appointment for a further follow-up the next Wednesday by which time I knew the various consultants would have reviewed my case in order to determine the suggested treatment.  I was already preparing myself mentally for chemo, I just hoped the number of cycles would be limited (more about that in a bit).

So, another week will go by without knowing what the full diagnosis is, although I understood I was edging ever more towards needing chemo.

24th June - Initial Pathology Report

I knew my case and any further follow-ups would now be based at St James’s hospital in Leeds where the specialist cancer centre is based.  Having received an expected follow-up letter to attend a CT scan on 1^st July (nearly two weeks post-op), I rang one of the Macmillon nurses at Harrogate to check why I had not received an appointment letter with the consultant at Leeds (it turned out the letter for this appointment arrived the next day).

During this conversation I explained that I was doing as much research as I could online into the potential next steps as this is the way I chose to deal with things.  As a result of this the nurse said that they had the preliminary pathology results back from my ‘sample’ and did I want to know them.  Well, of course I couldn’t really say no at this point, even if I had really wanted to wait to hear any news.

The nurse proceeded to tell me that the tumour was indeed cancerous and it was of a non-Seminoma type comprised of 95% Embryonal Carcinoma (I’ll refer to it as EC from now).  Ok, so what on earth does that mean!?

I quickly started Googling ‘Embryonal Carcinoma’ and it didn’t take long to learn from medical research papers (I was careful to only read quality information) that this was not the variant of cancer you would wish to pick if you were playing a perverse game of lucky dip.  I started reading terms like ‘aggressive’ and ‘likely to spread before lump is even noticeable’.  Oh no, this does not sound good.  I was further confused by reading that this variant may not register on blood tumour markers.  Until this point I’d been reassured from my blood tests that the tumour markers (measures in the blood that can show signs of the stage of the cancer) were all in the ‘normal’ range.  But does that count for nothing now given the variant I’d been diagnosed with?

I did more and more online research around the variant, I just couldn’t help myself, it’s the way I’m programmed.  I tried to be as objective as I could in the information I was reading and I certainly wasn’t looking at any diagnoseyourself.com type websites which could give false information.  I was reading technical medical research papers and first hand blog experiences by people who had been diagnosed with the same variant.  I felt this was the only way I could help to reconcile things in my own mind, even if a lot of the information didn’t fill me with positive thoughts on what my happen next in terms of treatment, i.e. chemotherapy.

I realised from all the reading I’d done that an ongoing surveillance programme (without treatment) was likely becoming less of an option.  Due to the aggressive nature of the variant, even if the consultants believe the cancer has been contained at stage 1, there’s a much higher chance of it returning.  Consequently I’d read that the likely advisable course of action would be some chemotherapy, regardless of what stage the cancer was at.

20th-23rd June - The high after the operation

The recovery continued to go well.  I was soon able to stop taking the ultra-strong co-codamol tablets I’d been described, but I did need to keep topped up on paracetamol and ibuprofen to suppress the pain.  It’s only when I inadvertently used the damaged muscle group through sneezing, coughing or making a misjudged turn did I really experience real pain.

Over the next few days I was on a bit of a mental high.  I’d had the procedure to limit any further damage or chance of spreading.  There was a chance that I still didn’t have cancer, and even if the pathology reports showed that the tissue was cancerous, there was a good chance that having the procedure may have been the only action that was required.  Unfortunately though, this high didn’t last for long.

19th June - The Orchidectomy operation

The Friday came round quickly and I checked-in at 7.30 am at the hospital and thankfully I was first-up on the day’s schedule for the surgeon.  After a relatively short wait – by which point I was in my sexy hospital gown - and some further checks and tests I was literally drawn up in marker pen with a big arrow on my upper left leg to ensure the surgeon removed the villain from the correct side.  I was then walked through to the surgery prep area and laid down on a bed.  Within 5 minutes I’d been wired up and was out for the count under general anaesthetic.

I awoke in the recovery area feeling pretty sore so I was prepped up with some morphine before being wheeled into the ward to get over the anaesthetic and have something to eat.  After a few hours I was ready to go home.  I was able to walk gingerly, but as the procedure was carried out from my lower abdomen downwards I was left with a 4 inch wound which had been stitched up.  This would take a number of weeks to heal and I wouldn't be able to do any lifting whilst the muscles and tissue recovered.

16th June - Sharing the diagnosis

Following all the checks and tests I drove home on my own feeling numb.  In the space of a few hours I’d gone from being informed that my condition was probably nothing to worry about to being told that in all likelihood I had cancer.  How is someone supposed to make sense of that?

Driving home I started to realise that I’d need to tell some people, particularly my family and work.  Obviously I was in no state to return to work that day.

By the time I got home I thought I’d accepted the news and was dealing with it.  How wrong I was.  I rang work to speak to my colleague to inform him I wouldn’t be returning.  Whilst trying to explain what had gone on in the morning I broke down into tears, I just couldn’t hold it together.

On top of this I knew I had to inform my parents which I was dreading.  Jacki rang them to make sure they'd be in before we drove around and sat them down.  Thankfully Jacki was very collected and explained the situation in the best way possible given the circumstances.  I was surprised how well they seemed to take the news.  They were obviously upset and worried, but I suspect my mum in particular only thought there was a ‘chance’ I may have cancer, whereas Jacki and I realised there was in fact a high-probability.

I spent the rest of Tuesday and the next two days trying to come to terms with what was going on and to prepare myself for the procedure.  Whilst in the grand scheme of things the procedure was only a relatively small operation, I still found it hard to come to terms with the fact that a small part of my body was going to be removed.  But by the same token I knew I had an 'enemy' in my body and I wanted that thing out as quickly as possible before it could do any further damage.